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Support needed! Pancolitis and humira

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Ulcerative Colitis
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Posted 2/18/2016 12:46 AM (GMT 0)
Hello All-

I guess I am just writing to look for some support. I had another colonoscopy today and my diagnosis changed from proctitis to pancolitis. Its worrisome that my entire colon is affected now. And I also started humira today. So, I am trying to stay brave and positive, but it is a lot to take in and I am trying not be anxious about the future, the progression of the disease and the possible side effects of the humira.

Does anyone have some inspiration to share? Have you seen diagnoses like pancolitis get better with humira or does it more likely just reduce symptoms?

Thanks All!

Slidaway


-Pancolitis

Lialda
Mesalamine enemas
Humira
Iron
Calcium
Vit. D
Posted 2/18/2016 12:47 AM (GMT 0)
Usually they suggest Remicade first as it seems to have a better track record for UC patients. Any particular reason Humira was suggested first?
Posted 2/18/2016 2:17 AM (GMT 0)
I think the doctor thought Humira was more user friendly, but he didnt give me any other reasons.
Posted 2/18/2016 4:40 AM (GMT 0)
hey slid - sorry for the not so good news sad

curious tho - did you have an increase in symptoms, either recently or coming on for a while ? is that the reason for the scope ?
Posted 2/18/2016 8:56 AM (GMT 0)
I'm in remission for the first time ever, thanks to remicade (very similar to humira). about 60 percent respond to biologics (that is their uc symptoms improve) and about 30ish percent reach remission within a year of starting them. They're quick working drugs, you'll see a positive response within 3-6 weeks, if you're going to get said response. The side effects are statistically rare, but serious when they do occur. Those are the general odds you're up against, it's worth a shot/try. No uc treatment is guaranteed to work universally for everyone though.
Posted 2/18/2016 11:27 PM (GMT 0)
Thanks for the Input!!!

I got the scope for two reasons. First of all, I started getting these spasms that were incredibly painful. I wound up in the ER one night and they did a cat scan and found colitis through much more of my colon than before. Also, I get a yearly colonoscopy to watch for polyps (I have a history of the kind that can become cancerous.)
Posted 2/18/2016 11:29 PM (GMT 0)
John-

Thanks for your feedback!

When you say remission, does that mean you can eat a variety of foods and that you are generally well?
Posted 2/19/2016 1:13 AM (GMT 0)
Yes, I eat whatever I want to. My DW tries to keep us eating healthy food but I do indulge on fast food as the occasional treat, a few beers a week, etc. I have 1 nonurgent bm a day that's formed without any sign of uc (no blood, mucus, etc).
Posted 2/19/2016 10:24 PM (GMT 0)
Humira and Remicade are the same drug. Humira is easier because you can do it at home and it is delivered right to your door. Remicade, you have to go to the doctor's office and get an IV infusion which takes a lot more time and money. I did a lot of research before deciding on Humira and it has shown absolutely no side effects to date. Good Luck to you!!
Posted 2/19/2016 11:29 PM (GMT 0)
That's great. I have been on such a restricted low residue diet. I would love to be able to eat some fruits and vegetables again!

Its been 3 days and so far the only negative is I am so so tired, but that might be a just from UC or from recovering from the colonoscopy. Did you notice tiredness from the Humira?
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